Patient refusing Hospice - page 3

by jammycakesRN

9,205 Views | 36 Comments

I have been a home care nurse for the past two years, prior to that I worked in the clinic setting. I am not, nor ever have been a hospice nurse. In my area, we come in and help the patient on a temporary basis until they are... Read More


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    This discussion has been interesting for me to read as a new hospice volunteer (non-RN, just a respite volunteer). I haven't done it for that long, and by definition everyone I've seen has accepted hospice care, but I do see a range in how people approach the end of life, from frank "I'm dying soon" to seemingly acting as "normal" as possible.

    jammycakesRN: Maybe the DNR order is a sign of the patient being more accepting of death and the need for support (if not for him than for his wife). I hope the situation improves. You're being a good advocate for your patient.
    leslie :-D and tewdles like this.
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    Almost everyone with a terminal illness will benefit from hospice services. Death cannot be stopped but hospice can improve the quality of life that is left.
    Ginapixi, leslie :-D, and tewdles like this.
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    If this would be of any help, I was in hospice care once, and lived in a hospice house. I did get better and eventually moved to where I live now. I just need a few hours of daily home care now.
    leslie :-D and tewdles like this.
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    Quote from jammycakesRN
    I don't think I'm trying to force him to be on hospice, it's just that I know his wife is struggling & I do not have the resources (or know what resources) she needs that are available. I know she needs more help than I can provide. I am only there for an hour every other day. That's a lot of hours she is there alone with him. She is doing a great job at caring for him, but she has admitted that she doesn't know what to do when he passes.

    I told her she can call me, BUT he doesn't have a DNR order, so I have to consider him a full code & send him to the hospital and possibly even do chest compressions. He probably weighs less than 100 pounds now & the last time I tried to send him to the hospital, he refused. I'm just so out of my zone here, I have no idea what to do. I DID make a hospice referral, that's who he refused. His wife told me that he has already admitted to her that he doesn't have much time left, I just can't figure out why he doesnt want her to have some assistance.
    ------Sounds to me like he is having some MAJOR denial issue's with his situations, he is experiencing anger towards his situation which in turn is making his wife miserable. Is it a possibility that she could meet w/a Hospice team outside the home away from her husband? She is in dire need of answer's, a piece of mind, and rest from all of what she is doing. I too feel bad for her as her husband is being stuborn, which I too have seen in my career. Offer the wife phone numbers of resourse's that she herself can get ahold of w/o him knowing. Her husband is being selfish as well. These behaviors are NOT uncommon with people in his position and will "lash out" at those that they love because just maybe they are not ready to die yet. This is just my personal opinion as I have witnessed this behavior, but everyone is different. Sometimes you have to set your position aside in order to do whats best for those that need help....follow what is in your heart for his wife and not was has been taught per se.
    If you haven't already expierenced these type of pt's you will. Just keep in mind in order to help those in "dire straiaghts" its best to "step out of the box" just for that short time. I hope that this helps you jimmycakesRN and that it makes sense to you as well. People are different and have extrememly different ways of dealing/coping with life's situations.
    OldPhatMC and tewdles like this.
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    My suggestion is to visit with a few hospice companies yourself for info and present it to the pt and family so they can make an informed decision. Let them know it's hard to think about going that direction but as a nurse who has the pts well being as top priority, it is something they should explore before out right refusing.

    I'm sure every hospice is not the same but the company I am an RN with has the ability to see them as often as needed as well as aides that go to the homes to care for the pt's ADLs as often as needed. The one thing I always tell people is that Hospice doesn't mean we sit and watch you die. We give antibiotics as needed, wound care, medical equipment, and medications for situations that arise during end of life. I have had patients and families who hated the fact that they had to go on hospice but they are always so grateful for the services once they start.

    Again, I don't think you should attempt to influence them in any way but let them know they should have all the info before turning it down. This has been the most rewarding job in my life and I hate that more people don't get to experience having a calm, well trained end of life nurse to ensure the journey is as peaceful, comfortable transition. Feel free to message me if I can help in any way. Good luck
    tewdles likes this.
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    Ok. Here's an update. He has agreed to have hospice come talk to him tomorrow. I hope he will agree to let them help him. He said he wasn't going to like it if I wasn't going to be his nurse. His wife agreed & I explained that they can't have home care & hospice, but if they want me to, i would continue to visit them on my own time. I don't want them to feel like I'm abandoning them & I don't want him to refuse hospice just so I'll keep coming.

    Physically he continues to decline. I'm not familiar with the timeline of these kinds of things, but last week I noticed his teeth look like they're thinning or something, they almost look transparent on the edges. His skin around his eyes look really dark & his temples are very sunk in. Earlier this week he began to not be able to control his bladder. Today he seemed very confused and wasn't able to answer questions correctly.

    Do any of you experienced hospice nurses know about how long he has, based on those signs? It breaks my heart to see him go thru this, but I'm going to continue to be there for them.
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    It is hard to guess a timeline based upon the info you have given, but it sounds as if he is clearly declining toward death.
    I would caution you about visiting on your own time.
    Many might consider that activity a boundary violation that puts both you and the patient at risk.
    I do understand the desire to demonstrate that you are not abandoning them, but it seems you have done everything to empower this patient and family...it might be best for you, and for pt outcomes, if you step compassionately away.

    This is not a criticsm, mind you, just a suggestion.
    tnmarie and OldPhatMC like this.
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    I'm not really a fan of sticking around per se. But, seriously, if I tell him I won't ever see him again once he chooses hospice...he will NOT choose hospice. I discussed it with my director & she was okay with it. I don't think there will be much time for too many visits.
    tewdles likes this.
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    This situation reminds me of a conversation I had with a patient's wife just yesterday. The patient and his wife refused the Physician's recommendation for Hospice and opted to have home health involved. Medically, this patient is very appropriate for hospice. I did not mention hospice to the wife but she shared with me that she and the patient refused hospice as it was against their moral beliefs. She stated that while she understood hospice's purpose, the choice of giving up of "the good fight" was like choosing to end your life. Now although as a Nursing Professional, I may not share this belief I am also a patient advocate and so I chose to support the patient and his family in the best manner I know how.

    I see that they are willing to have a hospice and hopefully things will work out for the best. It sounds like you have done the right thing by clearing the visits with the director as well.

    In review of the situation, I wonder if you have a MSW to consult regarding end of life/hospice info? Or since you are uncomfortable with end of life, perhaps there are some Nursing continuing ed in your area?
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    You can't do anything. You have explained to them their option for hospice and they refused. They have the right to make decisions that none of us agree with but themselves. Love them, treat the patient as the caring home health nurse you are, and walk away. It's sad, it's nerve-wracking, but people have the right to make choices we don't like. I feel your pain - the exact same thing happened to me and the patient died in the hospital, with no family to support him, tubes everywhere, on Christmas Eve. It could have ended so differently. I left home health (loved it, though) and am now in hospice (love it more). Best of luck to you....don't let this stuff get to you.


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